kathymullaney58

Hi Michelle, I myself have crohn's disease, and i frequently get an ugly furry brown tongue. my Dr. told me it is related to reflux from the crohns and todl me to brush my tongue when i brush me teeth when it acts up. it takes a couple of days but it does clear it up. kathy

My son who was diagnosed almost 6 years ago had H1N1 and it did a number on him. it was recommened we still get him the shot which we did in early december right when he was finally geting back on track and he had a bad reaction to it. the morning after the shot he woke up dizzy (had never had this before) he then spike a fver and missed another whole week of school. However once he recovered there was some PANDAS symptoms, but mild compared to the virus itself. He si doing well right now. Good luck Kathy

Our son had PANDAS for over 6 yrs before I found an article about PANDAS and brought it to our family doctor, who was amazed how well the article described our son. We had seen numerous specialist in the medical and mental health feild and he was diagnosed with everything from lupus, JRA, mentally retarded, PDD, anxiety disorder, oh yes and munchhouse syndrome. The only thing consistent in his blood work through all these wonderful specialist was he had a very high SED rate 95% of the time. NO one ever tested him for strep as he never presented with classic strep symptoms. He ran exrtremely high fevers for weeks at a time and when he was not running a fever his temp ran very low (95.5)He has been on daily amoxicillian for 3 1/2 yrs now and showed gradual improvement each year, with last year being fantastic! At the end of the school year however he was exposed to strep and mono and showed middle regression from where he was. he started to come back within in a few weeks, but then got sick and again regressed and slowly started to improve. He began middle school in september, and he was not back to wherehe had been a year ago, but close. he did well in school. He does receive spec ed services but even in the regular ed classes he is in he got straight A's. at the end of the 1st qt (beginning of Nov) he caught the H1N1 flu. He was very sick and missed over a week of school and was a wreck! He had significant trouble functioning at school and came home in tears daily. I find it harder now when he regresses, becasue he realizes he is different now. he makes statements about wanting the old kid back and not liking who he is but not being able to change it. he is aware he is getting stuck (obessed) over stupid things. After 2 weeks of this we brought him to our family Dr. who consults with our Dr. at BOston Childrens hospital and we doubled his amoxicillain for 10 days. after 2 days we began to see improvement and on the fourth day he woke all excited claiming he was back to his old self!. He was much improved put I would say he is at about 80% right now but improving daily. he is a great kind lovable kid when he is symptom free and I always remind myself of that when he is having a hard time and i always try to remember how hard this is for him as well. Our experience is each set back is different in intensity and duration, but the encouraging news is they can recover! Good Luck